Authored article

Making sure we’re listening

Dame Fiona Caldicott, National Data Guardian, thinks listening is crucial in the public conversation about how health and care data is used.

Dame Fiona Caldicott

When I worked as a psychiatrist, I used to offer what is often called ‘talking treatment’ to my patients.

I’ve always thought though that the term ‘talking treatment’ is rather a misnomer. To me it seems that the most important aspect of these therapies is listening, for the clinician to hear, with attention and respect, what the person seeking help was telling them.

Recently I have been reflecting again on the theme of the importance of listening; I have been discussing with members of my advisory panel the value of engaging with the public as we work to ensure that health and care data is properly safeguarded and used to improve care.

The importance of listening to the public is a principle that it is easy to pay lip service to, but takes time and effort to do well. Besides, there is huge diversity in the range of views held by the millions of people who make up that group which is called, so apparently simply, “the public”.

I also try also to remember when we talk about how the health and care system works that we are mostly users of the NHS and many of us have used or will use care services. So as well as approaching these issues very conscious of my responsibilities as the National Data Guardian, I also do so as a patient and family member of other patients and service users.

I have been so pleased to take part in some of the discussions that have been organised to gauge opinion and influence implementation of the review I published in the summer on data security, consent and opt-outs.

The Department of Health has received a healthy number of responses to its written consultation, more than 650. The face-to-face sessions that have been run with health and care professionals and the public will also ensure there is a rounded view of opinion and experience informing policy.

The last of these takes place today (10 October 2016). When I attended one of these sessions a fortnight ago, it was instructive to hear a range of views from both professionals and the well-informed members of the public who took part.

I heard from researchers who were desperate to use data to make the breakthroughs they believed possible and to be given the opportunity to prove their trustworthiness to the public. I heard from clinicians who were still not confident that they could explain to patients how their data is used and the protections in place. I heard from patients who were angry about the way that information had been used without their knowledge in the past, and from members of the public who wanted their information and their families’ to be used more actively to make the advances in healthcare they want to see.

We talked and listened to a wide range of individuals in gathering evidence for the review. We found then, what I heard again 2 weeks ago – that it is not easy to achieve a consensus on how to balance sharing information to improve care and protecting it to restrict its use and respect privacy. We need to be realistic that there will be a spectrum of opinions and that wherever we draw the line to balance the interests of confidentiality and the benefits that can be gained by using data, some people will be unhappy.

We must try to find solutions that can be supported by most clinicians, researchers and, crucially the public. This requires a continuing conversation, requiring us to listen more than to dictate. We need to remain alert to changing views, while working hard to make sure that we earn and keep public trust.

Published 11 October 2016